TRIPLE POSITIVE GROUP

lago

fightergirl I am not a Boston Girl down deep… I'm from there. (OK well 20 minutes south east if you are traveling on the south east expressway at 3 in the morning on a Tuesday). My parents currently live in S. Yarmouth. I know what a bubbler, packie and spuckie rolls are. After a glass of wine I say pahty like the rest of you. And of course Yankees Suck!

First person in my family not to get a degree from BU. My photo was taken last October down the cape too.

Zoziana

NOLAGIRL112: How has this treamtent of TH been going for you? I know everyone is different, but any pattern to best days out of the week? (Days 5-7, etc?) Also, did you try to save hair (I am not), or if not, was hair loss on head between day 7-14 or 14-21 or? And, any GI side effects of note? I will ask on the weekly Taxol thread too, but thought since you were still in the midst of treatment and this group is smaller, that I would check with you first.

LAGO: Thank you for sharing your treatment history and that you are HURRAY still quite NED! That is also very confidence inspiring. Though my port site is aching, my house is a bit of a mess and I'm not as organized as I'd like, I'm heading to bed to watch some TV before going to bed and waking up to head for my first CHEMO FRIDAY. Thanks everyone for all the support her; it has really helped me feel I have chosen the best plan for me at this time, and improved my mental state immemsely.

Anonymous

At the time two of the three on a recommended the taxol,herceptin protocol, it was actually not used a lot here in the states, but much more in Europe for early stage. The onc I settled on also thought outside the box , and got a lot of training at the National Cancer Institute, and said results in Europe were really great for early stage. In his opinion and words... (Say this in a very proper Indian Britishness accent) "you just need a little chemo to make the herceptin work better, we think). The third person wanted me to do adriamycin and the whole 9 yards. The other two were stunned and couldn't believe it.

I will say,I did a lot of research and asked a lot of questions. My original oncologist was a yogi master and taught a class twice a week. Usually a small group,of 6-8, so we became pretty close. I would have followed him anywhere. His death was such a huge loss that docs and once still talk about losing is knowledge and conviction.

Kate-on the tamoxifen component, my new onc said there is a lot more evidence that points to ten years on tamoxifen being better. I took tamoxifen for just short of three years and then had a weird Pap smear, so my ob/gyn and onc talked and switched me over IMmediately to arimidex. If there is a big difference, I will stay with ten years, but maybe take a break for a month or so. If the percentages are small, I might quit if I can get the courage to have nothing. Very nerve rattling.

Zoz-neuropathy for me was tingly fingers and toes, and they were ice cold all the time. My husband put heating pads at the bottom of the bed every night and one on top of my hands. It was a Godsend

Bird-of-light

SpeciakK - You rock! Thank you for the links. I also want to thank everyone who shares their story. It is comforting being a part of this group. HUGS!

Light

Lvbugs

zoziana, I thought I would reply to your TH question. I also did chemo on Friday and found Sunday and Monday my most tired days. Friday and Saturday pretty hopped up on the steroids they give you as premeds. Biggest complaint would be the dry nose. A humidifier helped with that and some AYR nasal saline. First week had some D, but after that was ok. Hair started coming out in handfuls at week 4. Although I never lost it completely. Taste started to change at the end for a few days every week. Had a few more weird things, but nothing major. I did exercise and I drank a lot of water.

Good luck today

Bird-of-light

Slapp, I resonate with your chemo concerns. My surgery has been delayed for 20 days, because we are waiting for genetic tests. I had a PET/CT scan yesterday. I am anxious for the results.

SpecialK

zoziana and all - if you want some housework help contact these folks, they will offer free housecleaning to those in treatment:

http://www.cleaningforareason.org/

bird - glad the links were useful! If you have not heard from your MO by this afternoon re your PET call the office, PET is usually read pretty fast and that way you won't wait over the weekend and be worried. I had my regular MO appt. yesterday and he scheduled a PET for me in about a week. I have had several and he always has his nurse call me as quickly as possible with results even though I can read the report as soon as he posts it to the patient portal after he reads it, because he knows it is nerve wracking to wait. He said yesterday as I was walking out - to call him the day of the PET so he will be on watch for the report - love him!

All - I had my 5-year on hormonal therapy appt. yesterday. I wanted it before my May 17 surgery to swap my left TE for an implant, swap my right implant for a smaller one and remove the right nipple, and do a bunch of fat grafting to try to make this mess look decent. Back in December my MO said "it is time for your port to come out" but in light of the results of my BCI (Breast Cancer Index) test, which was high risk of recurrence with low benefit from continuing anti-hormonals past 5 years, I wanted him to confirm that he wanted the port out. He does. He also wants me to continue on Femara if I am tolerating it decently, because low benefit is not necessarily zero benefit - and I have not recurred yet (that we know of - thus, the PET scan). He said the data indicates that those who have a high result on the recurrence aspect usually recur prior to the 5 year mark, so he was encouraged that Femara is doing some good. He also put me on low dose Metformin for potential additional risk mitigation, and wants me to continue to take low dose aspirin.

momwriter

TresJolie- cool you have "my" team! I felt so good about them that I traveled from Western Mass to go to the BI. I still love to get together with Dr. Wulf.

Fighter Girl- I had my second opinion at DF-- what an amazing place that is as well! Dr. Dominici was my BS consult and Dr. Burstein my MO consult- confirmed everything their colleagues at BI had recommended.

Special K-- quick question- how can I take the BCI test? Is this common now?

SpecialK

momwriter - your MO has to order it and have access to your original tumor. I wouldn't say it is common, and you should check with your insurance company to see if they cover it. Here is the website for the test:

http://www.biotheranostics.com/patient-breast-cancer

lago

momwriter didn't know you were from western MA. Although I'm from SE of Boston I worked in East Long Meadow for a while (living in Springfield).

Bird-of-light

Yippie! My PET scan shows the cancer has not mets. What a relief! I saw a plastic surgeon yesterday. Now I need to decide if I want a BMX or lumpectomy. Both ovaries need to go too. The plan is to do both surgeries at once. Scary, but I will have robotic surgery for the ovaries. Any advice?

SpecialK- you seem like quite the warrior! Your knowledge and experience is so helpful to me and others on this site. I don't have a port yet, but I imagine it must be scary nearing the end of treatment.

ElaineTherese

Small world, lago. I went to high school in Springfield, Mass. (Cathedral High), though I lived in northern Connecticut (Enfield). And yes, Yankees suck! Papi power last night.

fightergirl711

We are a bunch of Massh@l3s! I grew up in Ipswich, went to school in Boston, whole family is still on the North Shore. AND Elaine I was at that game last night! Froze my butt off but it was a blast!

Re-excision and ALND officially scheduled for June 7. Praying that the chemo has been doing its job.

SpecialK

bird - thanks and I am glad that anything I can add to the conversation is helpful to you! I regard myself as no more, or less, a warrior than anyone else here - we all get through this experience the best we can - with support from each other. One thing I know for sure - nobody gets it like someone who has been through it. I am going to continue on anti-hormonals for the time being, despite the test info indicating low benefit - because it seems to be working so far. It is a don't mess with success approach. I am ambivalent about the port removal, a little superstitious, like as soon as it is removed I will need it - but intellectually, I know that it is time. It was placed during BMX on 11/1/10 - I have had it a long time.

ElaineTherese

Bird, congrats on your PET results! Robotic surgery is supposed to be less invasive and easier to recover from. So are lumpectomies (as compared to mastectomies). I had a lumpectomy because I wanted an easy recovery and didn't want to have to deal with reconstruction and all that entailed.

Fightergirl! I'll bet you froze your butt off. Those April games are a bit on the cold side. Thankfully, it was a (relatively) short game for BOS-NYY, and it had a successful conclusion. Yes, hopefully, chemo did its job. I had ALND, too -- hope your surgery goes well for you!

lago

Bird that's awesome news. Here's your happy dance song: linky

Zoziana

Special K- If PET is clean, it does make sense to lose the port, but I understand your feelings I think. There is a study right now about continuing AI's longer than 5 years, is there not? But it either isn't finished or the data hasn't been crunched yet, I think. My MO told me it would be 5-10 years for me, but it would depend. I don't see why you wouldn't continue if you are tolerating them well.

Question re facial flushing and nausea: So, this is evening of Day 2 post first TH combo. I am taking the Zofran every 12 hours, but at the 10 hour point (around 5 pm) I got nauseous, and also found myself with very red flushed cheeks and nose. I took Zofran early, and also the max allowed dose of liquid Benadryl. Nausea is kept at bay (but it is there) and nose flushing was greatly reduced but cheeks are flushed red. Some fingertip tingling noticed ,too. So I'm guessing these are just standard SE's as I head into my Day 3-5, which are often the harder days on the TH combo.

Bird-of-light

Lago- thanks for making my morning! I haven't heard that song in years. Smiling!!!!

Bird-of-light

Lago- if I recall, your implants were put it immediately after MX, right? The surgeon I saw said he wouldn't do that. He said I need spacers. My lump is 7mm-1cm. PET read 1cm.

lago

No Bird I had expanders (what you call spacers) first.

Bird-of-light

Lago -I'll get the lingo soon... May I ask, why you chose BMX over lumpectomy? Cancer sure puts you under the gun to make decisions.

SpecialK

zoziana - The reason continuing Femara past five years was in question had to do with my result from the BCI test done in December, it indicated that I was receiving low benefit - and potentially have been since I started it. The consensus reached at my MO apt on Thursday was two fold - I am "tolerating" Femara ok - although currently having some trigger issues with a thumb and ankle, but am making a manufacturer change - and that those who score high for recurrence on BCI usually have recurred prior to the five year point, and I have not. Our assumption is that it must be providing me some benefit, or I have just been lucky so far - either way, I am staying on. I do have bone issues, that existed prior to diagnosis, but were worsened pretty dramatically after chemo and six months of Femara, and am currently receiving Prolia - which has helped with that. I think we will review this on a year by year basis - and yes, I have graduated to annual appointments with MO now! Yay! (I think, lol!) There has been study info completed for Tamoxifen and the data indicates 10 years is better than 5, but the study for AI drugs is incomplete as of now. There should be a lot more data available for those of you who are newly diagnosed by the time you reach the five year point.

The flushed cheeks, nose (and sometimes chest) are usually a result of the steroids (dexamethasone/Decadron) given with chemo - I got this every time - kind of looked like a sunburn. It usually subsides after about 48 hours. Interestingly several years after chemo I needed a cortisone injection to the knee (twisted it while on Arimidex and it swelled up and turned red - an inappropriate response which was exacerbated by the drug) and I got that same red face - but times about five times more intense due to the amount of cortisone! It was sort of neon - not a good look! As previously, it took about 48 hours to subside.

Camann

are you using Perjeta as well as Herceptin ?

Slapp

Hi Everyone, can I ask of everyone who has iced with Chemo, did you feel like you had success with it? Minimal Neuropathy SE's or? I appreciate the feedback as the staff at Misty has not mentioned this to me, I just happened to see it mentioned in other posts.

Thanks! Slapp

momallthetime

Tresjoli I don't know your History, you still would like to have kids? Is that why you are preserving the ovaries? My daughter is now 31, she was in her mid 20's but has 2 little girls, she had a oophorectomy and Hystero. It was done laparoscopically, she had a day of rest and then moved on. Bird of light - of course she took it easy for awhile. She of course is in full menopause, she manages but it's not always pleasant.

Also, regarding dense breasts, it's definitely advisable for women with dense breasts to have sonograms every time, this I know from personal experience. And just this week they had another write up about it

http://well.blogs.nytimes.com/2016/04/26/notificat...

I am very familiar with those situations so just wanted to put it out there. Best of luck on all of your decisions.

Ladies, you are such a nice bunch. I was perusing this site for awhile now, I hesitated to post, bcs my daughter is Stage IV, and I hate to put a damper on everyone. BUT we would like to hear what you guys say with your experience.

Original Dx she was ER+PR+HER2- then after METS and after much aggressive progression, 2n biopsy showed she is Triple Positive. So she did try Herceptin, Perjeta abraxane together, then TDM1 on it's own, (although I begged ONCO to add Herceptin or Perjeta to it), anyway then tx changed again, and now new Onco put her on Herceptin and Tykerb together, did anyone here ever hear of these 2 together? Please let us know asap.

Zoziana

Special K: Glad you are on only once a year MO check ups! Your logic re: drug plan makes sense to me. I, too, have preexisitng bone issues and I am sure chemo and the Femara will do a business on them, too. Did you do the acid infusions at all? I hadn't thought of the steroids as a possible reason for flushing. This first week of chemo is just one discovery after another.

Momallthetime: Check out the drug pages on this site. I know Tykerb works by a different mechanism than other drugs and maybe that is why it was chosen...to help the Herceptin reach the cells in a different way or something. I am no scientist--just trying out a bit of logic here. Best of luck to your daughter.

Tresjoli2

i had flushed cheeks on TH. Totally normally for a few days.

Momallthetime...no, I have two kids and no plans to have anymore. But there are benefits to keeping your ovaries, even if you don't plan to have more children. Both my MO and my OB/GYN insisted that I keep them.

KateB79

I iced my hands and feet during taxotere infusions. It sucked, but I'm glad I did it; I have no neuropathy.

lago

Bird my tumor was 6.5cm including the 1cm DCIS in the left. My former breast was only a 34B and I mean barely. Had to take that one off. The other breast had 3 suspicious areas. One my BS (breast surgeon) was really concerned about. He said all 3 would have to be biopsied every year. So I removed that breast too without even a biopsy due to time. Ended up that spot he was concerned about was LCIS. Had we known I the recommendation would have been to remove it anyway given that I had cancer in the other breast already.

Slap after my 1st chemo I sucked on ice chips and I never got a mouth sore. I tried to ice my fingernails but didn't have much success. I do think it's worth a try. My nails never fully recovered. I have some minor neuropathy in my left foot/heel/arch. Almost gone now but some days I notice it.

momallthetime you are not putting a damper on anything. I do recommend you also post in the Stage IV threads because they do have more experience with how stage IV is treated. TDM1 known as Kadcyla is like super Herceptin. Herceptin and Tykerb is often used. Tykerb is small enough to penetrate the blood/brain barrier. If that stoops working then they may try Kadcyla or something else. There is no one way to treat all this.

Mommato3

Special, You mentioned that those that score high on the BCI test typically recur before five years. Isn't the test usually given right before five years to determine if you'll continue with an AI? The BCI states that anyone over 5% is considered high risk. I don't really consider that high risk. 5% seems pretty low to me. Is it based on a different scale? I talked to my MO about it at my last appointment. She hasn't had anyone yet that has taken the test. She also hasn't heard any news about the trial showing whether 10 years on an AI is beneficial.

I also had a flushed face from the steroids. It wasn't pretty but thankfully it only lasted about 24 hours.

Momallthetime, you're certainly welcome here. I can't help you with that particular protocol. Hopefully someone on a Stage 4 thread can help you out.